My son with autism has 3 sisters. D is 21, T is 18, and MH is 11. They all live at home with us, and sometimes (well, who am I kidding? Most of the time) the dynamics can be downright crazy. The 2 eldest bicker and in-fight alot, and the youngest is usually embarrassed by her older brother and his disability. The most I ever had hoped for was that somehow, magically, they would all love each other and show kindness toward one another, but I wasn't sure how to bring that about. I grew up the eldest of 3, with 2 younger brothers, and we all fought and bickered, but we were never given any guidance about our relationships by my parents. It was either "Get along, or else!!" or my mother would be sad that we were fighting. We grew apart as we got older, and only now as middle-aged adults with families of our own are we getting to know each other, and yes, I'm happy to report, really love each other. Wow, I want this for my kids! But I don't want them to have to wait until they are grown to be close to each other.
I want to say that what followed was my idea. That it was part of a brilliant plan I came up with, and that it solved the entire sibling issue. Well, I can't claim any of these things. But what did happen was practical, and subtle, and beautiful. Here's how it went:
D, who is the eldest, started doing JohnPaul's homework with him. She has been ill for several years now, and cannot work or attend college, so she's home when he gets off the bus. She started helping him with a few assignments, and then took over the homework job 3 weeks ago. In a few short weeks she has grasped his learning style, and works with him, modifying the work which allows him to do it as independently as possible. This means pointing to the words as he struggles to read directions and worksheets, rephrasing for him, and then writing the answers he generates down in large print on a wipeboard. He copies his own answers that she has written. She knows how to narrow down more complex assignments, giving him 2 choices instead of 5 or 6. His confidence has risen! He doesn't balk at homework time! And his sister has gained too. She asked me if I thought she would make a good teacher. I do, I told her. I am proud of them both. And this relationship has not gone unnoticed by the other 2 sisters. Now the 18 yr old is asking what can she do with her brother. The younger sister, aged 11, is losing the bossy tone, and has been more understanding when helping him with chores. I hear more "please set the table, JohnPaul" instead of "I said Set The Table!". Little changes are occurring, making me feel darn good. The 2 older sisters have taken it upon themselves to take their brother to the local library every week, guiding him to choose movies and books that are on his level. I haven't seen any change in their fiesty relationship yet, but at least they are both spending less time thinking about themselves and more time thinking about him.
That's what it's all about, I want to tell them. Thinking about others. I want to tell them this, even though I know they won't listen. The world tells us it's all about us. That we're #1. That success is the most important thing. Why should they listen to me? But I think one day, they will listen. They're already on the way to figuring it out for themselves.
And listening to what their hearts are telling them. It's all about what we can give to others.
Saturday, October 24, 2009
Thursday, October 1, 2009
School, currently
My son started highschool this summer. He is 14, and is now a freshman. During the summer, the high school offered a program that consisted of part-academics and part-work. The students worked doing maintenence jobs like:
painting walls and picnic tables
planting a vegetable garden
planting an herb garden for the polytech cooking school
weeding and watering both gardens
putting a fence up around said gardens because deer were eating them
putting down mulch
scraping gum off the undersides of desks (almost vomited when I heard that one)
The students were paid minimum wage. Their aides acted as job coaches. It was a great experience, and my son loved it. He came home talking about how he loved to work. He requested more chores at home. It was a really great summer.
Now that school has started for the regular school year, it's almost all academics and no jobs. He's bummed. We're bummed. It's definitely a bummer. We must be patient. We must play our cards right. This huge high school has never really had a large or developed special education program. They've always had the monies to send disabled kids out to private settings. Now that money is tight, they need to provide programs for all these special needs students on site...and so what we're all experiencing are growing pains.
Growing pains is the term I try to use instead of crabbing and complaining about how they don't know what they're doing, they don't understand Autism, they don't have the mindset to teach our kids, they don't know how important communication with parents is, they don't get that social skills is much more than just MANNERS.....and on and on. I figure - my friends who are the parents of the other special needs kids- and I - we had a month to complain. 4 weeks to cry.
30 days to commiserate over a less-than-adequate program that we could run better with our eyes closed. OK, enough now. Venting is useful only in short bursts, and then you have to get to work. I make lists of all the positives. I look for what the teachers are doing right. I email them and thank them first, then I point out a problem or ask for a change to be made. I try and smile more, in general. Inside, I still am terrified. This terrible panicky feeling shoots through me, and I feel certain that no-one in this entire world will ever know what to do for my son, and that he will be lost without me (which is why I can never die), and I want to scream. It's really sheer panic. I never asked other parents if they feel this too, but I guess I have to live with it. I am determined to forge some kind of relationship with this school, hopefully a positive one, but that will be up to them. If they refuse to accomodate our son, by not allowing us to play a major role in developing and implementing his program, we will have to push. Hard. I'm not trying to sound dire here, just strong and direct. I have only worked in a school for 6 years, but that's long enough to see how teachers get defensive and even antagonistic when parents advocate for their kids. And that's just plain not necessary. We've really strayed very far from the 'team' concept , where we're all working towards that same goal: the child.
We need to find a way back to that place. Work together. Stop putting budgets first. Sometimes, I want to say "Remember why you became a teacher in the first place." Hopefully it was to help kids, not just because teachers get a good prescription plan.
Parents have to remind themselves of the same thing at times, right? Why did I want kids? Stop, take a look around, and appreciate where I am. I am lucky. I am blessed. I have been given far more than I deserve. Let me never forget that. In remembering this, we find reserves of patience and compassion we didn't know we had. We can forgive. We can go on, and the struggle is less bitter, and more sweet. Maybe even humorous, and memorable.
painting walls and picnic tables
planting a vegetable garden
planting an herb garden for the polytech cooking school
weeding and watering both gardens
putting a fence up around said gardens because deer were eating them
putting down mulch
scraping gum off the undersides of desks (almost vomited when I heard that one)
The students were paid minimum wage. Their aides acted as job coaches. It was a great experience, and my son loved it. He came home talking about how he loved to work. He requested more chores at home. It was a really great summer.
Now that school has started for the regular school year, it's almost all academics and no jobs. He's bummed. We're bummed. It's definitely a bummer. We must be patient. We must play our cards right. This huge high school has never really had a large or developed special education program. They've always had the monies to send disabled kids out to private settings. Now that money is tight, they need to provide programs for all these special needs students on site...and so what we're all experiencing are growing pains.
Growing pains is the term I try to use instead of crabbing and complaining about how they don't know what they're doing, they don't understand Autism, they don't have the mindset to teach our kids, they don't know how important communication with parents is, they don't get that social skills is much more than just MANNERS.....and on and on. I figure - my friends who are the parents of the other special needs kids- and I - we had a month to complain. 4 weeks to cry.
30 days to commiserate over a less-than-adequate program that we could run better with our eyes closed. OK, enough now. Venting is useful only in short bursts, and then you have to get to work. I make lists of all the positives. I look for what the teachers are doing right. I email them and thank them first, then I point out a problem or ask for a change to be made. I try and smile more, in general. Inside, I still am terrified. This terrible panicky feeling shoots through me, and I feel certain that no-one in this entire world will ever know what to do for my son, and that he will be lost without me (which is why I can never die), and I want to scream. It's really sheer panic. I never asked other parents if they feel this too, but I guess I have to live with it. I am determined to forge some kind of relationship with this school, hopefully a positive one, but that will be up to them. If they refuse to accomodate our son, by not allowing us to play a major role in developing and implementing his program, we will have to push. Hard. I'm not trying to sound dire here, just strong and direct. I have only worked in a school for 6 years, but that's long enough to see how teachers get defensive and even antagonistic when parents advocate for their kids. And that's just plain not necessary. We've really strayed very far from the 'team' concept , where we're all working towards that same goal: the child.
We need to find a way back to that place. Work together. Stop putting budgets first. Sometimes, I want to say "Remember why you became a teacher in the first place." Hopefully it was to help kids, not just because teachers get a good prescription plan.
Parents have to remind themselves of the same thing at times, right? Why did I want kids? Stop, take a look around, and appreciate where I am. I am lucky. I am blessed. I have been given far more than I deserve. Let me never forget that. In remembering this, we find reserves of patience and compassion we didn't know we had. We can forgive. We can go on, and the struggle is less bitter, and more sweet. Maybe even humorous, and memorable.
Friday, August 7, 2009
What is needed for Autism services?
I'm taking part in a survey given by Autism New Jersey, where parents of kids with autism, and professionals who work with individuals with autism are asked: what works? and what is needed? Wow, what IS needed? Well, just about EVERYTHING!!
Yes, here in NJ the schools that have programs for kids with autism do have some nice things in place. But there is still a huge amount of work to be done.
We need: visual aides in classrooms
teachers and aides to be trained in 'autism'
parent groups for support and education
community workshops/presentations to increase awareness of autism
first responders training on autism (cops and EMT people)
training on 'modifications' to regular ed classes
recreational/leisure skills training and activities for people with ASD
Better awareness of ASD with pediatricians and other mainstream doctors
Anti-bullying training for middle-schoolers and older students
I know I've left lots out, but those are the main areas (in my book) that need to be worked on.
Don't get me wrong - I am pro-disability awareness in ALL areas. I work with kids with a great variety of disabilities, and they should all be unconditionally accepted. But autism is so quirky, so unique, and so damned difficult!!! Believe me, I know first hand how frustrating it can be to identify it and then acknowledge and accept it. But look at the numbers...in the US, it's 1 in 150. In NJ, it's 1 in 94. And now we know that worldwide, the autism numbers are rising. In Austrailia, it's 1 in 120. When will the world look at autism square in the face and see that it is here to stay? And that we have people in EVERY COMMUNITY who have autism, who will live a normal lifespan, and be part of our towns and cities and lives, and who deserve help and services just like the rest of us? Come one, people, Let's Go! Autism is a reality. Accept it.
Or as my friend Sue says, "Build a bridge, and get over it!"
Yes, here in NJ the schools that have programs for kids with autism do have some nice things in place. But there is still a huge amount of work to be done.
We need: visual aides in classrooms
teachers and aides to be trained in 'autism'
parent groups for support and education
community workshops/presentations to increase awareness of autism
first responders training on autism (cops and EMT people)
training on 'modifications' to regular ed classes
recreational/leisure skills training and activities for people with ASD
Better awareness of ASD with pediatricians and other mainstream doctors
Anti-bullying training for middle-schoolers and older students
I know I've left lots out, but those are the main areas (in my book) that need to be worked on.
Don't get me wrong - I am pro-disability awareness in ALL areas. I work with kids with a great variety of disabilities, and they should all be unconditionally accepted. But autism is so quirky, so unique, and so damned difficult!!! Believe me, I know first hand how frustrating it can be to identify it and then acknowledge and accept it. But look at the numbers...in the US, it's 1 in 150. In NJ, it's 1 in 94. And now we know that worldwide, the autism numbers are rising. In Austrailia, it's 1 in 120. When will the world look at autism square in the face and see that it is here to stay? And that we have people in EVERY COMMUNITY who have autism, who will live a normal lifespan, and be part of our towns and cities and lives, and who deserve help and services just like the rest of us? Come one, people, Let's Go! Autism is a reality. Accept it.
Or as my friend Sue says, "Build a bridge, and get over it!"
Thursday, August 6, 2009
BAD DAY. Sad day. Whoa, this is turning out like a Dr. Seuss book. It was a bad start to the day. (that's better) My husband and I woke up having a "long, serious talk". The poor kids never got breakfast. The long serious talk turned into a quiet, intense fight. Topic? Our son's education. We both agree on what he needs, but we seem to set each other off when we talk about it. We both feel as though the other one is not listening. I have an inferiority complex, so I always take everything my husband says as criticism. It can get emotional. It stinks. I sometimes see myself getting in the car and driving away, never to return. I would never do it, but I envisioned it. As a parent, there's good stress and there's bad stress. And often these overlap, so that it all feels like bad stress. I have a big old dinner plate full of bad stress right now. I'm off to take a shower! That's about the only place to get away to, so I'm going! Then some red wine, and I'll start dinner. It will get better, I will tell myself, and it will. But it still stinks.
Sunday, June 21, 2009
Let's Go, Part 1
This blog is called Let's Go because we have no choice. There's a kid with autism, he happens to belong to us, and we have to keep on going. Initially I thought of blogging out of despair. To connect. To seek others' despair, and find solace in comraderie. Not anymore. Nope. No ma'am. Let's Go is now hopeful, and humorous. Hey, how else will we survive?
Let's Go.
My son is 14. He has autism. He is verbal, sweet, and very very tall. I also have 3 daughters. They were, each in their turn, embarrassed by him, and now enamored of him. My husband and I both have special education backgrounds, he is retired and I continue to work. Yeah, he is the old guy, and I'm the sweet young thing. He was a preschool special ed teacher, and I am a speech tx. I also work with kids with autism. I like it!
So I live with autism, and I work with autism. So far, so good. No burn outs, but when I develop an attitude, a glass of wine helps. I work with some very dedicated people, and some terrific families. I live in a community with a rising autism population. I am just following my calling.
I couldn't do what I do without believing in God. Otherwise, what sense would all of this make? Not much. But here we are, so let's get on with it.
I'm not the most consistant blogger. There's a lot going on here in my house. Bear with me...I'll ask for your help, and maybe (hopefully) my words will make sense to you.
Let's Go.
My son is 14. He has autism. He is verbal, sweet, and very very tall. I also have 3 daughters. They were, each in their turn, embarrassed by him, and now enamored of him. My husband and I both have special education backgrounds, he is retired and I continue to work. Yeah, he is the old guy, and I'm the sweet young thing. He was a preschool special ed teacher, and I am a speech tx. I also work with kids with autism. I like it!
So I live with autism, and I work with autism. So far, so good. No burn outs, but when I develop an attitude, a glass of wine helps. I work with some very dedicated people, and some terrific families. I live in a community with a rising autism population. I am just following my calling.
I couldn't do what I do without believing in God. Otherwise, what sense would all of this make? Not much. But here we are, so let's get on with it.
I'm not the most consistant blogger. There's a lot going on here in my house. Bear with me...I'll ask for your help, and maybe (hopefully) my words will make sense to you.
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